The Eating Disorder You Have Likely Never Heard of

 The Eating Disorder You Have Likely Never Heard of Photo

While most people think of bulimia or anorexia when they think of eating disorders, there are other lesser-known food disorders that affect children and adults alike. Avoidant/Restrictive Food Intake Disorder (AFRID) is one of them.

“AFRID is an eating disorder that could be described as extreme picky eating or the extreme fear of trying new foods, but it’s more than that,” says Stephanie Elliot, author of the book Sad Perfect, a fictionalized account of her daughter McKaelen’s real-life struggle with the disorder. It’s listed in the DSM-5 as a mental disorder as well as an eating disorder. Unlike anorexia and bulimia, however, those who have ARFID don’t have self-image or body issues. They’re not restricting food for those reasons at all.

“They truly fear they may choke to death or die by eating an unsafe food, whether their fear stems from a childhood trauma, a previous choking incident, PSTD or some other unknown factor that might come up in therapy someday,” Elliot says. “It’s pretty complicated.”

As far as how common the disease is, it’s difficult to pinpoint because it’s so often confused with picky eating. But AFRID is so much more.

“The main difference between picky eating and ARFID is that with ARFID, you’ll get a person who is extremely anxious and depressed, someone who will possibly become anti-social because their fear of being around food-based social events becomes so strong, they’d rather isolate themselves than be in a situation where they have to hide their disorder,” she says.

Elliot says they suspected something was wrong when their daughter wouldn’t expand her menu of foods. At first, they just thought she was a picky eater, and since her height and weight were normal, the pediatrician told them she would outgrow it. However, when going out to restaurants, get-togethers and holidays started to become stressful because of her eating habits, they became concerned. When she started avoiding friends and sleepovers and parties, that’s when the real red flag went up.

“We had taken her to several doctors, therapists, nutritionists, anyone we thought could give us answers to why our daughter was the way she was,” Elliot says. “No one had any explanation for what was going on with her. Finally, I took her to an eating disorder center where they had heard of ARFID, and we had our answer. It was such a relief to know there was a name for what was going on with her.”

Once they had a diagnosis, at age 15, McKaelen went through a 20-week outpatient therapy program and learned coping skills, worked with a nutritionist, had group therapy, ate group meals, and had one-on-one therapy sessions. Now, two years later, she’s doing “so much better.”

“While she doesn’t love everything she tries, she is open to trying new food items and has expanded her menu. Not only that, she is much more social, is no longer depressed or anxious. She is happy and healthy, and we are so thankful that we found a safe place for her to receive treatment.”

As for her novel, Sad Perfect, which she began writing while McKaelen was in the outpatient program, she hopes it brings more awareness to the disorder. “I hope readers, especially those who might see themselves as maybe having ARFID, will find hope in this book, and not be scared to ask for help if they need it.”